Everything Hurts

self help

A story of our pain, then and now

mental health, pain, self help, books, story, personalAmanda VinciComment

The other day, my friend asked "can you imagine having chronic pain in the 1800's?" I immediately recalled a short story I read in college — The Yellow Wallpaper.

"You see, he does not believe I am sick! And what can one do?" The narrator of the story is at a loss for how to get her doctor husband and brother to see her invisible illness. They tell her that the very worst thing to do is to think about her condition, that doing so will only make her sicker. Boy, if I haven't heard that before.

The woman and her husband rent a mansion for the summer, and she's immediately uneasy with the decision. Everyone around her tells her it'll be good for her, she'll be able to get fresh air and exercise, and the change of environment will help with her poor mental state. Sound familiar? I thought so.

This story was published in 1892. When I read it in 2009 I felt as if I was reading a memoir of myself. Here was this woman, a woman trapped in a time period that felt so long ago — and she was experiencing the same treatment of her illness as I had received. She feels guilty for not getting better, and for not fully appreciating the help others have given her. She struggles with the treatment plan put in place for her. She is ordered to not work, get plenty of exercise and take pills at every hour of the day. She also struggles to define what she calls her "nervous condition."

If you haven't read The Yellow Wallpaper, I strongly recommend it. It is relatable to all of us suffering with an invisible illness, both mental and physical. It perfectly captures in a very personal way just how women with unseen pain were regarded not too long ago. Most women were passed off as "hysterical" when they complained of their pain. Unfortunately most of us have experienced modern day treatment reminiscent of this throughout our own medical journey.

I remember sitting in class as each student read a paragraph out loud. When we had an open discussion about what we read I really wanted to share my story, and how easily I could relate to this woman — but I stayed quiet. I was embarrassed that like the main character, I would be thought of by my peers as crazy or self obsessed. This only made me more like the lady trapped in The Yellow Wallpaper.

This story is a perfect depiction of what can happen to a person when their condition is ignored and their pain is not believed. Although it is not a story of triumph, it is a story that must be heard. Read it here, and let me know how it made you feel.

 
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I get by with a little help from my furry friend

chronic pain, pain, self help, wellness, mental healthAmanda VinciComment
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One of the greatest love stories ever told? It is about the love between a spoonie and their animal companion. Specifically for me, it is between myself and a ferret named Sneaky Weasel. Yes, his name is Sneaky Weasel — Sneaks for short. As many can attest, animal affection is so beneficial when fighting a chronic illness. Mine just so happens to comes in the form of a fluffy, big-butted weasel, with a passion for toy donuts.

Baby wearing? Weasel wearing. Sneaks loves to be held close, and his cuddles are just what the doctor ordered my constant pain is getting me down.

Baby wearing? Weasel wearing. Sneaks loves to be held close, and his cuddles are just what the doctor ordered my constant pain is getting me down.

Four years ago, my boyfriend and I became the proud parents of this little ferret. We welcomed him into our home, and quickly into our hearts (and everything else he could squeeze through). He began to change the way we thought, felt, and interacted with each other. Importantly, he changed how I was able to handle the highs and lows of living with constant pain. 

Waking up in pain isn't quite the same when I've got these guys by my side.

Waking up in pain isn't quite the same when I've got these guys by my side.

It is no secret that those of us who suffer with any long term illness will also experience depression and anxiety. It's so easy to slip into these mental states when thinking about our pain, about the uncertainty of our health and the barriers it has created in our lives. My darkest moments are when I begin to focus on the incurability of what I have, how I may always feel this way, no end in sight. One night last year, I cried for hours in my dark bedroom thinking about this. I was inconsolable. My boyfriend, genius that he is, fetched Sneaks from his sleeping place and placed him on my chest. Sneaks stood perfectly still (uncharacteristic of ferrets). He let me hold him until I calmed down, licking the tears from my face.

I always feel better when Sneaks is nearby, but that night I knew he had become an essential part of my well being. I swear that since then something has changed between us. He senses when I'm having a flare, or am hitting a rough patch emotionally. When I lie in bed, groaning in pain, he hops right on up and gets all up in my face, as if to say "you okay ma?"

Having to take care of Sneaks — clean his litter box, give him fresh food and water, make sure he gets plenty of play time — motivates me to take care of myself. Getting out of bed each morning is so tough, but with cheerful Sneaks looking on, waiting for me to let him out of his habitat, I have extra motivation to start my day.

A sweet celebration. We went all out for the little man's 4th birthday, complete with real gourmet donuts for the humans and tons of toy donuts for Weasel.

A sweet celebration. We went all out for the little man's 4th birthday, complete with real gourmet donuts for the humans and tons of toy donuts for Weasel.

I've had a connection to animals ever since I was a little girl. Being an only child until the age of thirteen meant that I had a lot of nonhuman siblings. From Yorkshire Terriers to a New York Red Rooster to a terrarium of snails, I swore I could talk to the animals, and heard them speak back to me. No matter how sick or alone I was feeling, I always knew I had the companionship of my pets.

My love for all animals has only grown as I've gotten older. Now, more than ever, I know it is essential to my health both mentally and physically to coexist with other creatures. I have become a vegetarian for many reasons, the largest being out of respect for animals. I am so grateful for how they help me to heal a little more each day.

Cross Country with Chronic Pain

blog, chronic pain, holiday, self help, travelAmanda VinciComment
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Surprising yourself with your ability to do what you thought you couldn't is a great feeling. During the last week of December and first week of January, I surprised myself with that feeling every day. My boyfriend and I loaded up our car and drove cross country from New York City to Cupertino California. We made this 60 hour trip over a period of nine days. The fact that I sat through, and even drove a portion of 60 hours still blows my mind — I usually have increased pain after being in the car only a few hours.

So how did I do it? It's still a little bit of a mystery to me. I certainly prepared myself for the trip both mentally and physically, but I also learned a lot about my tolerance and my ability along the way. Here are my three keys 🔑🔑🔑 for surviving a spoonie road trip.

 
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🔑 I knew from the beginning that planning would be an essential part of getting us across the country. And not just planning which awesome sights to see, but planning hour by hour when was driving time, when was resting time, eating time... etc. I decided that the trip should begin with some of the longest driving days, and that the time spent in the car would gradually get shorter as the days went on. I knew I would have more pain and less tolerance for staying seated the further we got into the trip. 

The Joshua Tree House Airbnb, Joshua Tree CA

The Joshua Tree House Airbnb, Joshua Tree CA

 
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🔑 My greatest fear in life is being out there in the world and not having any of my pain relieving products with me. I'm not lying, that's the stuff of nightmares. If it was up to me, I would have packed a whole extra suitcase filled with everything that brings me comfort and joy, but alas, that is frowned upon by the TSA (I was flying home). So I sat down, had a heart to heart with my products, and picked the ones I knew would be the most helpful. When leaving home, even if it's for a day, it's so important to remember all your medications, even if they're not daily meds. You never know what you might end up needing, and as a former girl scout, I know it's always best to be prepared.

One of my favorite pain relieving lotions, along for the ride. Post about which it is, coming soon!

One of my favorite pain relieving lotions, along for the ride. Post about which it is, coming soon!

 
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🔑 While you may be listening to your killer road trip playlist, one must never forget to stop and listen to their body. Throughout the long car rides I would take time to focus on what it was that I was feeling, what parts were hurting, and how I would describe the pain. I often dismiss my pain as the same terrible pains without actually dedicating my attention to them. All the extra time I had now allowed me to focus on me. On my body. Doing that allowed me to know when I should get out of the car and stretch, or use a certain product, or even go to the bathroom. I find that the most effective way of treating my pain is to listen to my pain. It's saying something, so hear it — even if you may want to reply with "EFFFF YOUUU".

Marveling the monstrous cacti in Saguaro National Park, Tucson AZ

Marveling the monstrous cacti in Saguaro National Park, Tucson AZ

The amazing part of this trip was that it wasn't about my pain. It was about feeling good, and about time spent together, and about discovering what lies ahead. It's easier to forget your daily struggle when you leave part of it behind. Over two weeks of no work and responsibility did my mind and body a lot of good, even if I was pushing my body to the limit. I felt like I was able to free myself from myself. Letting go of my preconceived notions of what it meant to be a sick girl, and who I really am as a person – how I am much more than my illness.

We stayed in some beautiful places (and one not-so beautiful one), ate delicious food (although not always the healthiest choices), I even got a deep tissue massage (though still not as good as my PT's) and had great conversations (even a handful about my pain).

The little car that could — our VW GTI. Its heated seats got me through the back pain.

The little car that could — our VW GTI. Its heated seats got me through the back pain.

At the end, the trip was not only about unbridled adventure but signaled a change in my life. My boyfriend of almost six years would be staying in Cupertino for work until July. I knew the change wouldn't be easy, but it was necessary. I'm extremely proud of him, and also proud of myself — I've never lived alone, and that was mostly because of my chronic pain. These next six months will be new for me, and they may be scary — but I am choosing to use this time to improve my health and learn how to be independent in caring for my pain. 

Giant rocks of Joshua Tree National Park, CA

Giant rocks of Joshua Tree National Park, CA

When I think about the literal road I've traveled, I can't help but smile. This was something I never thought possible of myself, and there I was, doing it all. And I'll do it all again in July, when we pass through the northern states of America to go back home. During the trip we kept talking about how one hour drives will no longer feel like an eternity now that we've done ten hour trips. That also applies to my condition. If I could make it across the entire US, I can surely be alright if the subway is delayed when I'm in extra pain.

"Prada Marfa" permanent art installation — Marfa, Texas

"Prada Marfa" permanent art installation — Marfa, Texas

The trip had given me a new perspective on what I was able to do.
I knew I could now do what I thought I can't.